IBC after IDC, anyone?
As he explained, since it is in the lymphatic, it is the same as IBC. I will be on chemo next week, very likely this recurrence will have the same receptor as the old one. weThen surgery to remove expander and as much skin as possible. Like he said, the cancer cells creeps alongside in the lymphatic system and there might be more than what we can see now. So if i didn't have a mastectomy and had tissues in my breast, it might have grown into a lump rather than skin mets. My theory is that since there was no tissue, it grew under the skin.
So a local recurrence with skin mets like mine put in the IBC catagory? I am very confused. My surgeon said a local recurrence is still curable. But am i better off with a distant met from my primary dx or a local recurrence with IBC? I am not afraid of chemos or losing my half reconstructed breasts. I looked at some studies and the prognosis for IBC is still so bad.
Anyone else had the same issue? Thanks!
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Yanyan,
I started out with ibc, bone mets & a 3.5 cm idc tumor. I had no idea there was anything wrong with me except what looked like an itchy bug bite. Ibc is in the lymphatics and like a web under the skin. If diagnosed with ibc, chemo is always first.
In your case this is a reoccurrence and it looks like you have already had the mastectomy. You will have to do chemo and get this under control. They may want to check the hormone status with a biopsy again to see if it's changed.
I have done very well with treatment, surgery & hormone treatment as well as Zometa for the bones since 6/09. I am ER+ so I take Femara.
I wish you well with your treatment and I know they will be monitoring you closely from now on.
Terri
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I was first dx with DCIS and IDC 4 years ago in March 2008. Had lumpectomy, node dissection 2/8 malignant, AC x 4, 12 weekly Taxol with concurrent Herceptin, then just Herceptin every 3 weeks. While still on Herceptin and in the midst of my 30 rads treatments, started showing signs of IBC. All my doctors said no way could it be IBC after all the chemo and radiation I had. Several months went by, symptoms getting worse. I insisted the biopsy it and I was right, it was IBC. Went to MDA, they stopped my Herceptin, started me on Tykerb and Xeloda for 6 months. Stopped the Xeloda, had a uni-mx. Pathology showed NED. Still on the Tykerb, have been for 2-1/2 years now. Last check up at MDA was in January. PET/CT still shows NED.
I am doing great. IBC is NOT a death sentence. Many women do great after being dx with it! Hope this helps. Good luck!
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Yanyan, my issue is of course not precisely the same as yours, but I go in with one symptom, that my breast was hardish and rough-feeling across the front of it. Turns out I had three diff cancers in one boob. Unreal. The hard and rough skin was IBC, a clinical diagnosis, then I had a 5cm+ growth and two satellites that I never felt as IDC, and then a mole on my boob was a melanoma. Talk about a rambling wreck! I'm just over a year out from all this, had ages of chemo, then surgery, then rads. I had a modified radical mastectomy, surgeon said incision margins were clear, and now that my boob has settled down and completely healed, it feels smoother each day, to where I feel better than I have in years. So, while there is some scary stuff out there about IBC as relates to percentages, this girl here is one who beat the odds, and since there HAS to be those who do, you are more than welcome to step over the line and be on my side. GG
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Thank you Ladies for your kind support and suggestions! I was trying to figure out if a recurrent breast cancer in the skin is considered IBC since all skin mets spread via lymphatic systems just like IBC. After reading your posts, i don't think it matters anymore. What matters is to find the right treatment and keep it at bay. My situation is like Faith316. The redness got worse toward my last herceptin treatment which was last month.
Hi, Bon. My recurrence is not in open wound. It was a very small nodule underneath my skin near the mastectomy scar. The readness is from the scar to where the nodule was. Some skin was also removed for biopsy but the surgeon couldn't get a clear margin.
Hi Faith316 I am surprised they didn't give you any more big chemo treatment. Looking back i think my recurrence was also shortly after radiation. But because the red bump/rash didn't get worse, i assumed it was nothing. I am also ER/PR- and HER2+. Is it true that local recurrence for people who had mastectomy also occurs in the skin ?
Reading everyone's response really gives me lots of hope. I have a 5 year old and i told her recently that i might lose my hair again. She said " good my medicine does not do that ! ".
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Not sure what you mean by not giving me any more big chemo treatments.
That Xeloda and Tykerb is powerful stuff! In fact, after having only one dose of each, I could see a difference in my IBC symptoms. My family all thought, yeah, right. It is just wishful thinking on your part. But, I really did. 3 weeks later, my IBC rash was totally gone and the skin thickening, redness, swelling, etc. were MUCH improved. One month after being on X and T, I had another PET/CT and it was clear! That was in Aug. 2009. Had another PET/CT in Nov. 2009, still clear. Mastectomy and another node dissection in Feb. 2010 and pathology showed still NED. So, I have been NED now since Aug. 2009. Still on Tykerb.
In my book, Xeloda and Tykerb are awesome drugs! The side effects they caused for me were lots of diarrhea, hand and foot syndrome -- major skin splits and bleeding hands and feet while on Xeloda and lots of toenail infections, swelling, painful ingrown nails from the Tykerb which I am still struggling with. But, no hair loss. I was only on Xeloda for 6 months but have been on the Tykerb for almost 3 years now.
Good luck to you.
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Hi Faith! I am glad to hear that tykerb and Xeolda worked for you ! My oncologist said I will be likely on abraxane which is like taxane. I consider the drugs that give you hair loss big chemo guns.I think it was because I was previously treated with taxotere so the second line of treatment is in the same catagory. I have heard a lot of positive results about tykerb and Xeolda. My doctor mentioned it will be abraxane with herceptin or tykerb. I will have have the expander removed after chemo. My surgeon said at least 2 years before reconstruction.
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Hi Bon! I was on herceptin for one year and discovered the skin problem on my last herceptin on 2/22/2012. So technically I was still on herceptin. My skin mets are red thick and rashly but no open wounds. I am also trying to get a second opinion. I don't know if my Onco is going to continue me on herceptin or give me tykerb. I think for people that have have distant mets, Herceptin Or other target therapy drug for her2 positive will be given indefinitely until it stops working.
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But, Herceptin doesn't work for everyone. It didn't work for me. I recurred while on Herceptin. That's why they stopped it and switched to Tykerb.
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True, herceptin does not work for everyone and some people become resistant to herceptin. We are fortunate that Tykerb is out, which is also a target therapy drug for Her2 positive. The FDA is also reviewing another drug P*** ( don't remember how to spell it ) in June and hopefully TDM1 will be available soon. I go to another support group for HER2 positive http://www.her2support.org, lots of helpful info there if you are interested Faith.0
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Hi Faith316! I will be getting the same drugs you had- Tykerb and Xeolda. I brought your case to my oncologist and they had a tumor board meeting yesterday. I am hoping this drug will work for me as well as it did for you and many others !!
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Really? Hearing about my case made your doctors change their minds about how to treat you?
Good luck! I hope you have as good a response as I did. Please keep us posted how things are going for you.
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Hi ladies. An update on my treatment- I started xeloda and tykerb last Tuesday. Today is day 5! My only complain is 7 trips to bathroom on day 2 then everything went back to normal. No side effects. I don't know if I should consider myself lucky with little SE. I so want the good rash from tykerb. My surgeon will see me in a month. We are watching if this drug will do the work. If there is no regression, he will proceed with surgery. His concern is that chemo drugs may not be delivered efficiently to a radiated area because of damaged vessel with poor blood supply. I think my rash seems to be lighter in color but not sure if it's all in my mind! Faith36 you said you could see the difference after one dose of each. Did you mean one cycle? Or did you mean next day of you first tablets? When you had PET scan with IBC, did it light up? Mine didn't. My surgeon explained It wont show up on PET or US, he meant skin mets. I asked ladies in my her2 support how long it takes before I can see any improvement. Some say it's just like IV chemo and takes time to build up in your blood till the drug can kick in. I am just so anxious to see it work!
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I saw improvement in my rash one day after starting Xeloda and Tykerb. I didn't have a PET/CT when first dx with IBC. I had had some previously, but the IBC was diagnosed from the punch and surgical biopsies. I did have a PET/CT one month into the Xeloda and Tykerb treatment. I'll have to pull my report to see what it said then.
Regarding side effects --- glad that so far, so good. But, the hand and foot syndrome doesn't always start immediately. It is kind of cumulative and mine got worse the longer I was on the drugs. (I'm still on Tykerb nearly 3 years now and still have some issues, but nowhere near like the Xeloda caused.) So, start taking care of your hands and feet now. Moisturize several times per day.
Glad you came back on with an update. Please keep us posted.
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Hi Ladies. I am back for an update. I have just finished one cycle of Xeloda and my oncologist is happy with the results. He said the oral chemo drugs are slow compared to IV chemos. My 2 red patches are lighter in color and flatter so i will be on cycle 2 next week. My tumor marker test results are still normal. So far so good. I don't think if those rashes would disappear completely and if they do, how long it takes. My follow up with the surgeon is next month.
Hi Faith, for how long were you on xeloda/tykerb before you had the mastectomy? I know i am going to have it for sure but not sure when..i am guessing maybe 6 months on xeloda so they can get a better margin? Are you thinking about reconstruction? I wanted my breasts to look as good as possible so i went with lattisimus flap to avoid the horizontal scar. Now with recurrence in the skin, my whole reconstruction on the cancer side will be gone. I am kinda of upset since now my back has 2 long scars and my breast is a mess. I was going to wear my first bikini this summer
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I was on Xeloda and Tykerb together for 6 months before my mastectomy. I stopped the Xeloda a few weeks before the surgery but stayed on the Tykerb and am still on Tykerb. (In July, it will be three full years that I have been on it.)
I originally wanted DIEP at the time of my mastectomy. I even went for a consult at NOLA. But all my doctors wanted me to wait awhile since it was IBC. But, as time passes and I get further and further away from the mx, I'm not sure I'll ever have reconstruction because I don't want to go through another surgery. I may change my mind at some point, but I don't know. I'm ok with my prosthesis. It is comfortable to me and I really don't even notice it at all during the day. So ..... we'll see.
Glad to hear the update! Keep us posted.
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Thanks Faith! It makes sense to stay on it for a while to get a clear surgical margin. I keep looking at my rash everyday and it's driving me nuts. I was also told I should at least wait 2 years to consider reconstruction. Another lady in my her2 support group had recurrence in her skin and was given tykerb and xeloda. She also went to slogan but was told no surgery. She previously had mastectomy. I havent heard back from her as why no surgery for her. She is not stage v. My oncologist was surprised when I mentioned this to him. He said skin mets get very hard to treat so he wants to yank them all out.
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